May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
Chronic Bacterial and Viral Infections in Neurodegenerative and Neurobehavioral Diseases by Garth Nicolson, Ph.D.
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Borrelia is discussed in Nicolson's article, as are other infections such as Chlamydia Pneumonia (Cpn). I noticed, for the first time, that Nicolson made reference to a HHV-7. I have read about HHV-6. Did not know there is a 7. Hmmm.
For chronic illnesses (CFS, FMS, RA, among other illnesses) that could have an infectious component, The Institute for Molecular Medicine suggests the following lab tests (codes are CPT codes):
1. MycoplasmaTest Panel (CPT: 87798x3, 87581)--Mycoplasma species panel of 4 pathogenic mycoplasmas (M. fermentans, M. penumoniae, M. hominis, M. penetrans) by PCR.
Alternatively, a Mycoplasma general (all species) test by Qualitative PCR can be substituted.
Continued at link.
This is good for EVERYONE to look at.
Other tests are discussed, too, such as Cpn, HHV-6, etc.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Oh, afterthought - and edited into above post on this topic:
about STEROID EYE DROPS:
while steroids are generally contraindicated with lyme except in emergencies, occasionally, short term use of steroid EYEDROPS can be very helpful, &/or very necessary in certain situations where nothing else is as effective. With the proper guidance, LD pts have seen improvement. This could save vision in some cases.
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I had this test done in '84 and they glue electrodes to my scalp, no they did not shave. You would be instructed not to wash hair with any conditioning shampoo prior to test, however. The hair needs to be squeaky clean to have the glue or paste hold. It will wash out, but takes a little effort.
I stared at a screen and saw black and white checks doing funny things.
You might call the lab where you are going and ask about the procedures in case they've changed. AND, if you are chemically sensitive, ask about the glues used, if there is one that is safe for MCS and if they have fresh air ventilation if not.
A visual evoked potential (VEP) is an evoked potential caused by sensory stimulation of a subject's electroencephalography.
Commonly used visual stimuli are flashing lights, or checkerboards on a video screen that flicker between black on white to white on black (invert contrast).
. . .
Other applications include the diagnosis of optic neuritis, which causes the signal to be delayed. Such a delay is also a classic finding in Multiple Sclerosis.
Visual evoked potentials are furthermore used in the investigation of basic functions of visual perception.
The term "visual evoked potential" is used interchangeably with "visually evoked potential". It usually refers to responses recorded from the occipital cortex.
Sometimes, the term "visual evoked cortical potential" (VECP) is used to distinguish the VEP from retinal or subcortical potentials. The multifocal VEP is used to record separate responses for visual field locations.
- full article at link.visual field and is observed using an
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[ 16. May 2008, 03:34 PM: Message edited by: Keebler ]
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Keebler
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Motion-onset and pattern-reversal visual evoked potentials in diagnostics of neuroborreliosis.
Kubov� Z, Szanyi J, Langrov� J, Kreml�cek J, Kuba M, Honegr K. Department of Pathophysiology, Charles University in Prague, Faculty of Medicine in Hradec Kr�lov�, Czech Republic.
Neuroborreliosis is a form of borreliosis that affects the central and/or peripheral nervous system.
Although it can mimic neurologic and ophthalmologic disorders such as multiple sclerosis and optic neuritis, visual evoked potential (VEP) examination is usually not used in neuroborreliosis diagnostics.
Combined VEP testing (pattern-reversal VEPs and VEPs produced in response to linear and radial motion) was performed in 81 patients with neuroborreliosis verified by laboratory results (positive polymerase chain reaction or intrathecal antibodies production).
Thirty-four patients reported diplopia or blurred vision related to borreliosis.
In 33 (40%) patients the VEPs were delayed: motion-onset VEPs were pathologic in 22 (27%) patients, reversal VEPs in 5 (6%) patients, and both VEP types in 6 (7%) patients.
The findings suggest that VEP testing (especially the motion-onset VEP testing) can confirm CNS involvement.
Much higher sensitivity of motion-onset VEPs in comparison with reversal VEPs can result from rather selective (earlier) involvement of the magnocellular system or the dorsal stream of the visual pathway.
posted
Yup the neurologists ordered a LP for me and I told them heck NO.
This was even after having a head MRI that showed the famous nonspecific white matter lesions. I had also done a cervical MRI. Neurologistis told me that the lesions were 'normal'. Whatever. Yea normal for LD you idiot.
What are LP's good for? What specificallly are they looking for in the LP?
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Michelle M
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quote: They aren't going to stick needles INTO my head for the evoked potential are they? I found that a little confusing. They just attach them to my scalp with some kind of adhesive. Please tell me they aren't going to shave my head.
I think I need to go back & read more about the visual evoked potential.
AliGator!!
Sheesh Golly!
The visual evoked potentials testing (VEP, it's called!) is such a piece of cake. You get some sticky thingies stuck on your scalp. No shaving or anything remotely uncomfortable.
You basically sit and look at a pretty cool flashing checkboard pattern on a screen. You look at it so long you 'bout get a headache from it. It's very 60's. Very psychedelic, baby!!
And that's about all there is to it!!
Note that positive findings on VEP do NOT necessarily indicate that you have MS!!
Now, the lumbar puncture, that's a tad bit different.
I'm not sure WHAT they could hope to find that could definitely convince anyone you had MS over lyme. Considering most things expected to be found in an MS tap can also be found in a lyme tap. So I really like the suggestion to put that off a tad bit, unless you would aggravate your lyme doc unreasonably. But seriously, oligoclonal banding -- most neuro docs will swear it's MS -- ain't so. COULD be lyme. And on and on.
Here's one thing to remember about a spinal tap.
The procedure itself really did not hurt. Honest.
As directed, I drank so much liquid prior to the procedure that I waddled in.
Afterward, I was forbidden to rise to go pee.
I thought I could wait it out rather than suffer the indignity of a bedpan.
Oh, how LOOOONG I suffered before I caved.
(Speaking of caved, I sure do miss Cave.)
I followed every directive to the letter, yet still suffered a massive headache that lasted several days, relieved only by lying prone.
Findings were elevated proteins and opening pressure, and a mix of other bizarre readings.
Don't sweat it. You will come through just fine. I just KNOW it. But here's a hug, just in case!!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I am so sorry for what is happening to you...
I have been looking around about MS, because I also had that as a POSSIBLE DX,
"Multiple Sclerosis" Litterly means "Multiple lesions" It does NOT say what these "Multiple Lesions" come from. It is almost like calling something "Fibromyalgia" which means Pain in the Fiborous muscles, but does not give cause to why.
There has to be something CAUSING, Multiple lesions, ETC...
So it could be that LYME is the culprit and if you look up Lida Mattman and MS...You will see that she found BB in almost all tests subjects that were DX'd with MS, PD, Alzheimers, Lupus, ETC...
I hope you dont have to go through a LP...my son had one when he was just a baby and...well..uh
I am wishing you well!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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AliG
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posted
Oh my goodness!!!!! It looks like I have some work to do here!
My DH dragged me away for a few days & I come back to find that there are 56 replies on my thread!!!!!
I have to get busy reading & responding. Unfortunately I'm quite tired (make that completely exhausted) so I think I'll have to try to do this tomorrow.
I glanced through & saw that there seems to be loads of great points made & a wealth of good advice. ((((((GREAT BIG GIANT HUGS))))))
I also see lots of love from my friends, whom I think I freaked out by changing the thread title. I don't think any of you really missed this. It originally said "Optic Neuritis - Please help me!!!" and I was looking for info on that. If you never had the "ON", you would have likely (& understandably)SOB'd. (It wasn't you, it was me! )
The "Lumbar Puncture" part many would more likely be familiar with.
Thanks everyone for all of your replies. I truly appreciate all the information, comforting words, encouragement, explanations, reassurances, advice, prayers, good wishes and MUCH NEEDED hugs! I will try to do all of my homework tomorrow and see if I can digest everything.
(DANG, Keebler! You've REALLY been doing some research!!!!!!! Thanks for the MULTITUDE of links!!!! )
Thanks again! Back soon, Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Keebler
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posted
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Ali,
Some of my groups of links are surely from others' gatherings. I've collected them all over time and tried to consolidate. I'm just glad there is so much written and so many others have provided links along the way for us to learn from.
I hope your time away was good. Good luck with all this.
Oh, BTW, lyme can cause demyelinated areas just as "MS" - so if they say you have some demyelination and therefore that has to be MS, that is NOT so. I do not have the citations at my fingertips, it may be in the Goldings' article or you could cross search the terms at PubMed.
I always search with "lyme" and again with "borrelia" as it often brings up a different number of results.
And if you need an MRI, EAR PROTECTION IS VITAL. If you ear plugs do not seal correctly, make the technician stop until you get a tight seal. Even so, if someone is sound sensitive the MRI can still be very assaulting.
Plan to have someone drive you home and rest your ears - if there is ringing - rest until that stops before wearing any headphones or new noise exposures.
CT scans, and SPECT are quiet, however.
take care.
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[ 18. May 2008, 10:41 PM: Message edited by: Keebler ]
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Vermont_Lymie
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Hi dear Ali!
Just sent you a LONG long PM; which reiterates much of the good advice you already got above.
Ditto to what many folks said; to summarize:
If it were me, I would not do a spinal tap. If you know you have lyme, treat that as aggressively as you can. Why do more testing if it will not tell you anything that you don't already know?
Ditto to what Michelle said: I had a spinal tap years ago, the tap itself did not hurt at all.
But I could not get up and walk without massive horrible headaches for over a week afterwards!
I know you and your family will make the right decision! Be well and thinking of you!
My sons have intracranial hypertension. The main 2 symptoms are headaches & eye problems (swelling of the optic nerves).
They have had several LPs. Their neurosurgeon uses a sprotte needle which is a small needle. It decreases the chance of a spinal leak.
My kids neurosurgeon has them lay flat for at least 4 hours before they can go home. At home, they lay flat for at least another 24 hours.
Jordan gets an IV with caffeine right after the LP. Caffeine drinks also help the headache.
The amount of fluid taken off affects your recovery. My kids have high opening pressures (450) and have had as much as 50 ml of fluid taken off. If a high amount of fluid is taken off, it would take 2-3 weeks for them to recover.
I don't know about the pain of an LP. My kids are sedated for their LPs.
Some meds can cause intracranial hypertension:
Sulfonamides (e.g. Septra)
Tetracycline related compounds - Doxycycline, Minocycline, Accutane
I hope you find answers soon!
Peggy
-------------------- Peggy
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AliG
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posted
I'm still reading, but I think I have to post for clarification.
I must not have mentioned previously that I had an MRI of the Brain and orbits (with & without contrast) and there were NO ABNORMALITIES. NO LESIONS, nothing remarkable at all.
My regular Ophthalmologist sent me for that & said NO MS because of clean MRI!!!!!!
This is part of why this whole thing is freaking me out. Can I still have things show up on an LP when the MRI shows NOTHING?!!!! What kind of things????
Can someone tell me what the oligoclonal bands are/mean? Is there something else that could be determined/ruled out by the LP besides Lyme/MS? I will have to try to look that up after I finish reading all this.
I wonder if the purpose of my having the LP is more for some kind of "proof" that Lyme causes "MS". That would go toward the "greater good" and I might then consider subjecting myself to it if it would help convince some of the numb-nuts out there that there CAN be a connection between the two.
I would do it if I thought it would help some Lymies who had been misdxd with just "MS" get proper treatment and save them from the steroids.
I still don't want to do it, but that would be about the only way I could rationalize not making them drag me in, strap me down and knock me out first.
Geneal, I have to say that I much prefer to believe that my Sx are due to undertreatment. Thanks for the reminder about the inadequacy of the Zith to penetrate the BBB!
No BBB-crossing Lyme Txing ABX since early January with returned & increasing Lyme Sx. I think I should have still been on a Lyme Txing ABX WHILE taking the Levaquin for the BLO, NO?!!!
This HAS to be active Lyme! I NEED to believe that! I can't believe that my immune system has become confused, due to "molecular mimicry" and has turned on me.
I want to think it's because there is still an ACTIVE invasion, that my immune system is still fighting a battle (& sometime my own cells might mistakenly get caught in the cross-fire). I want to believe that if I can take the invaders down, I'll stop getting walloped.
I'm going back to read some more. I just wanted to note my clean MRI to clear up that one had already been done.
Thanks again! Back soon! Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Please read this article, it may help! The second Paragraph Talks about MS....its VERY interesting. I also have a hard time believeing my immune system has gone haywire and started attacking itself.....This article explains that really well!!
I hope you find the answer, and everything will be ok!!!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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AliG
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posted
Dilly!
That was EXACTLY what my Ophthalmologist said! (No lesions on MRI ruled out MS)
WHY DOES the Neuro-Ophth think it's necessary?!!!!!
Thanks for all the tips Dilly & everyone else, on how to try to avoid the after-effects of the LP. I think that has effectively scared the crasp out of me.
I'm not feeling so noble anymore after doing more reading. In thinking about it, it would seem that if no bands showed up, I could actually end up hurting the MS misdxd Lymies with more ammunition against them.
HUGE CONSIDERATION:
If I am Dxd with MS, would I choose to Tx with steroids? NO WAY IN HELL!!!!!! I would choose ABX and I would find a doctor that would Tx me with them. I know they're out there!!! I'm going to read Keebler's links to this MS/ABX info.
Why do we need to look further for MS? Why do I need invasive tests? Why can't we give me more ABX & see if I respond? I WAS STILL RESPONDING TO THE ROCEPHIN (until it was stopped)!!!!!!!!! THE LEVAQUIN WAS HELPING (with many bart-like Sx)!!!!!!
How do I get this LL?IDMD to give me more ABX?!! IDs don't Tx MS, so if MS - not his problem? (fair assessment?) Is it time for me to get to an ILADS doctor for another opinion? I think I either need to find another LLMD or take an "MS" Dx & get to a doctor that Txs it with ABX.
I don't think I can keep playing this game of hoping that the doctors I'm going to are learning from my treatment. One of my LLMDs did prescribe Levaquin to his receptionist, after my providing the link to Dr.B's video and she has been doing remarkably well since.
There's no telling how many present/future patients that info might benefit. Maybe my work with the LL?ID is done? Maybe I can move on to an open-minded MS doctor who can learn from my Tx and my primary LLMD can glean info from that connection as well?
I WISH I KNEW WHAT THAT LL?IDMD WAS THINKING?!!! I have no idea whether he is thinking of Txing me any further or just expects me to do Buhner's herbs. I don't know if he has me waiting to go back for 3 months to be sure it wasn't the Levaquin causing the eye problem.
Why would he have me going back in three months if he thought there was nothing else he could do for me? That would be TOTALLY pointless, would it not?
Perhaps I am just being impatient & overly fearful. He WAS open-minded enough to give me the Levaquin for the Bart Sx & was previously unfamiliar with Dr.B's findings.
ON CAN be caused by Levaquin (though my Ophth's don't seem to think it had ANYTHING to do with the Levaquin) LL?ID is NOT an Ophth and is likely trying to act in MY best interest, even though I think (as would most here ) that would be to GIVE ME MORE ABX!!!!!!!!
This is SOOOOoooo FRUSTRATING!!!!!!
So now I think I need to read some more & also pose that little question to the Neuro-Ophth about why we need to do LP to Dx MS if I WON'T do the steroids.
Back soon, Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
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posted
TC-
Dr.S said he will talk to me after the tests are done. He doesn't think he needs to make me schlep all the way out there again for a follow up appointment.
My Ophth had already warned me about the Neuro-Ophths feeling the need to order a whole bunch of tests to probably tell me the same thing he did. (So I actually was forewarned)
Since it wasn't clearing up though, he thought a second opinion from someone who sees these strange things all the time might be a good idea.
Dr.S also said that Dr.R should get the cataract out of my other eye "yesterday" and "what are we waiting for?"
That's "surgery" . I can't imagine that could be a good idea while not on ABX. Maybe I can talk Dr.R into ABX before/during/after surgery?!! That could be worth a shot!
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
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posted
I got sidetracked
Great Article UI . It DOES do a good job of explaining what we believe to be true.
Maybe the term "MS secondary to Lyme Disease" could be just a way of saying that Lyme is the cause of the damage? Perhaps it's NOT saying that Lyme has triggered a haywire autoimmune response?
I wonder if I misunderstood what he was telling me. I'm not so sure I misunderstood. He was talking about the OspA in Bb and OspA being a protein that's found in the human body.
I would think that if your body had recognized the Bb OspA as hostile it could take out some of our own OspA while trying to get at the Bb. If the immune system were to get rid if the Bb, would it then STOP attacking OUR OspA?
If we developed ABs to OUR OWN OspA proteins, would that throw up positive bands on the Lyme WB for OspA?
Agggggghhhhhhh! I hate when I go off on these tangents & confuse the heck out of myself!!!
Back up to reading Keebler's links again
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
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posted
Is there any type of coinfection or other comorbid condition that I might not be aware I have, that could be determined by the results of a LP?
I wish I could see into my future & know what the test results would be & where they would lead me.
Just thinking about having this done makes me want to cry. I imagine weeks of being tormented by the headaches I previously had (or worse). I don't know how I could stand that.
How does this sound, for a call to Dr.S's office:
"I understood that the lack of any lesions or abnormal findings on my MRI ruled out the possibility of MS. I had also heard that MS-like Sx can occur with under-Txd Lyme. Can you tell me exactly what would we be looking for with the LP and why it is necessary?"
Do you think posing that query to Dr.S might help clear up some of my confusion about this & possibly get him do back down on the LP?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
Yes, definitely ask questions. This is not the type of test you would want to get done with out being 100% sure why!
I don't know your whole story, but I think you mentioned trying to get to an ILADS doc. Could you tell Dr. S. you want to hold off on the L.P. until then?
What is his concern if you don't get a L.P. now vs. 6 months from now.....
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Keebler
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posted
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Unless they are looking at an ACUTE swelling of the brain or spinal cord such as with meningitis I am perplexed as to why they are even considering this.
So many other diagnostic measures are available for the eyes and optic nerve.
If they are only looking for MS, that is no reason for a LP.
Why can't you call the doctor and ask to speak to him as to why he wants you to have the LP....and what he is looking for or ruling out...
.....sometimes when we go to a doctor appointment we forget everything they said....so questioning him is not wrong.... I don't think he would back down on what he wants done....but he certainly needs to know your concerns about having the Lp or not.
Is your LLMD aware of your appointment with this eye specialist ....did this doctor send your LLMD a report of what he is doing and why....and what his opinion is from your appointment with him. Usually you have to ask them to send another doctor a report.
You should be able to call your doctors for any questions or concerns you have with any of the tests they order or treatments they have you do.
Maybe if your LLMD knew what was going on he would put you back on an antibiotic.....
Its all so overwhelming...
mtree
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AliG
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posted
I think there MUST be something else he would want to rule out. This isn't making sense to me either.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
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quote:Originally posted by mtree:
Ali.....
Just my 2cents.....
Why can't you call the doctor and ask to speak to him as to why he wants you to have the LP....and what he is looking for or ruling out...
.....sometimes when we go to a doctor appointment we forget everything they said....so questioning him is not wrong.... I don't think he would back down on what he wants done....but he certainly needs to know your concerns about having the Lp or not.
Is your LLMD aware of your appointment with this eye specialist ....did this doctor send your LLMD a report of what he is doing and why....and what his opinion is from your appointment with him. Usually you have to ask them to send another doctor a report.
You should be able to call your doctors for any questions or concerns you have with any of the tests they order or treatments they have you do.
Maybe if your LLMD knew what was going on he would put you back on an antibiotic.....
Its all so overwhelming...
mtree
Sorry mtree - you must have been posting at the same time I was & I didn't see your post because it ended up on the next page.
I think I have relapsed into a state of conversationally-challenged, semi-verbally paralyzed stupid right now. I'm having trouble collecting the thoughts floating around in my head & making them come out of my mouth in a sensible fashion.
I have the fear that I will call & say/ask none of what I want to, and get off the phone again feeling depressed & stupid.
I didn't really tell him anything that I would have felt it was important for him to know while I was there because I am not thinking right. I should know, by now, to bring notes of what I think is important to a doctors appointment.
I was told to bring copies of my medical records. I spent the previous day driving (almost blindly & terrified) to both LLMDs, the Ophth(twice) and my PCP to collect everything.
He just took the MRI CD and read from my PCP's records, that she had faxed over because for some reason I am not allowed to set eyes on them, and asked me questions. I didn't really know time frames, but I couldn't read ANYTHING (to try to cheat from the records) because my eyes were dilated.
The fact that I had gone through such a traumatic experience to get the records & he didn't even want to look at them, really threw me off my game. I couldn't get my mind past it to actually think about what he might need to know from my perspective.
I guess I'm afraid that I will freeze up again, when I try to call, so I feel the need to figure out how to convey what I want to know & what I feel the need to tell him before I actually pick up the phone.
I've been reading the links & it's not "sticking". I was hoping today would be a better "brain" day. So far, it's not looking too good.
He is sending a letter, copied to all four Drs and me. I am waiting to read it because I have no clue what he said. He was verbalizing everything he was writing but it just went right through my brain & landed somewhere on the floor.
I hate feeling like this! It's like the cat has not only my tongue, but my brain as well.
I am HUGELY depressed today. I think I'm feeling way beyond overwhelmed. I can not even make sense of what is happening with the possibility of "MS secondary to Lyme" as a Dx. I don't really know what that would mean to me, in terms of pursuing Tx.
Oh darn it!!!!! Now I'm crying and that will get me absolutely nowhere.
I HATE IDSA! I know this is somehow all their fault. If they weren't such a bunch of flaming Jack-arses, I'll bet the proper Tx of these stupid TBDs would be common knowledge among ALL doctors by now. :cussing: (much more productive than tears, don't you think)
Oh, as for LL?IDMD & ABX..... "Too much ABX are not good for you either." That's the response I got when I was astonished that he was sending me away with no ABX, in spite of my relapsing & with my new-found eye problem, not to be seen for another 3 months.
Remembering that just makes me want to vomit.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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JRWagner
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posted
PM mailbox is full
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AliG
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posted
I just realized that "MS Secondary to Lyme" means Lyme+MS, NOT "POST-Lyme MS"!!!!!!!!!!
That would mean that Lyme SHOULD still be Txd! RIGHT?!!!! It would mean that I am now being attacked on two fronts. Which actually with "molecular mimicry" we would be ANYWAY.
I feel like such a MORON! I HATE being
I HATE THIS DISEASE!!!!!! :cussing:
[ 20. May 2008, 03:57 PM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
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What's the meaning of the oligoclonal ABs? Do they mean we are making ABs to your our cells?
I do realize that, with Bb lurking about and mimicking our own cells, our immune systems would do that anyway. Would we be doing that WHILE we were presently being Txd with ABX or would that calm down our own immune response to them?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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cry cry cry....do the ugly face cry....the boohooing!! I know you think it won't get you anywhere.....but sometimes we just have to...
its not a sign of weakness its just our bodies reacting to all the pain and suffering its going through physicaly and emotionaly....just let it out
I'm saying lots of prayers for you... hope you have a better day.. mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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You sound ok to me.....you make perfect sence to me....
It is very frustrating trying to talk and the words just don't come out the way they should...... I find that I can't even understand sometimes what the doctors are saying to me.... The brain stuff is very difficult and hard to explain.....and it all can be and is very scarey . You maybe depressed...but totally not stupid!!
Trying to figure everything out on your own can be all too much to handle....not that I don't think you could....you are one tough cookie but you need support from your doctors...not more confusion then you already have with your symptoms.....
Try to write down your questions....not for any particular doctor....just for yourself.....write down your symptoms...your feelings.... Maybe even write everything that has been going on since...hhhhmmm...Jan. or earlier???
Then maybe you will have a clearer view of what YOU want to know ....and then be able to talk to one of your doctors.
Keep posting or pm me....... Let er rip...
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Thanks m
Good idea to write down my thoughts. I think I started doing that yesterday or the day before & lost the paper.
I'll have to try again.
I think I may have to get back to researching LLMDs again. I don't think my present course is going to do me any good.
You are right, dealing with my present Dr. is actually causing me tremendous stress. I would likely do much better with a doctor that I don't feel I have to question EVERY SINGLE Tx, every step of the way.
It's just too much when I relapse & can't think. I've had enough of this relapsing BS!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I went back to my regular Ophthalmologist today.
He had received the letter from Dr.S.
The letter had stated that the normal MRI would indicate no CNS Lyme & no MS.
I found that statement disconcerting because, to my understanding, it WOULD NOT rule out CNS Lyme. I asked my Ophth for his opinion & he said he doesn't believe that it would either.
I also told him that, from what I've read, I would have a 50-50 shot of anything turning up Lyme on the LP even if there is active CNS infection.
He said he will leave it up to me whether or not to get the tests done. He said that a Dx of MS would not influence him to change treatment for my eye problems.
When he looked at the nerve, he said the inflammation had definitely gone down. There was a marked contrast between the nerves in both eyes previously and he no longer sees that.
He does believe that I had a bout of Optic Neuritis which is resolving and will likely continue to do so, albeit a bit slowly.
He is going to remove the cataract in the other eye. He said it should take about 10 minutes and I'll be able to see fine to drive home & go about my business the same day. Once I have vision in that eye, the resolving issue in the other eye shouldn't be so noticeable.
Now I wonder what my two LLMDs will make of the letter. Since the presence of Uthoff's Phenomenon used to be the means for MS Dx, I would hope that they wouldn't want to make me get the LP either.
Then again, I am a big pain in their butts, so they just might want to seize the opportunity to be a pain in mine!
Nah - I'm sure that if they try to make me have it done, someone here probably already has a collection of links to the studies that show they can't rule out a Bb infection because of negative LP.
MS-schmeMS, It's CAUSED by Lyme and we ALL know it. There's got to be NO WAY that any Dr with a clue would even SUGGEST putting me on the dreaded STEROIDS for MS. (at least not in person )
I'm alright, I'm OK. This too shall pass!!!!
Thanks everyone for all of your support while I was panicking over this. You truly ARE the greatest bunch of people!
Ali
Maybe his remarks were designed to educate without alienation. I do believe that I might have been OK just to stick with my regular Ophth's assesment, as it seems he knew EXACTLY what he was talking about.
I REALLY hope that my Lyme-illiterate PCP might learn something, about the potential for systemic damage from improperly Txd TBDs, from the copy she received. (10 days of Amoxicillin for "classic bulls-eye" (with head embedded, no less) & had no clue what Babesiosis was )
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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bettyg
Unregistered
posted
..
ali, thx for the detailed update from you; i've been wondering about you.
DO NOT DRIVE HOME AFTER CATARACHT SURGERY! my husband's cataracht surgeon/RN both state this plus it's in writing in all literature.
we live 5 minutes away; your eye will have the huge patch on it blocking VIEWING of traffic and peripheral ok! best wishes on it ali!
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posted
Good to hear that the neuritis is getting better!! I think you'd be REALLY angry and disappointed if you had an LP.
It would be one more big problem. UGH!!
Hang in there!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Thanks Betty
I'll have to read the info packet that they gave me. I can't blow it up to large font like I can the computer type, so it will have to wait.
I could have sworn that he told me I wouldn't need a patch or anything because of the way it is done now.
He told me that they numb the eye with an anesthetic gel, give an injection in the hand of general anesthetic and then cut a 2.2mm opening, pop out the lens & put in a new plastic lens.
He said the whole procedure takes about 10 minutes & he did 14 of them yesterday before lunch.
****************
I just read the pre-op instructions. It says to make arrangements to have someone drive me home. How on earth did I get THAT mixed up?!!!
Thanks again, Betty! Where would I be without you looking out for me. Stuck at a surgical center I guess.
Ali
*****************************
I just realized something.... They said the reason for having someone drive is because of the anesthesia. Perhaps no patch, so I will be ABLE TO SEE on the way home(???) and I may have confused that to mean that I could drive. I'll bet that's what happened.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Good to hear that the eye is getting better.....even if its slowly....
.........and Betty was right... ...have someone drive you home....when you have the other eye surgery. It's amazing what they can do now....my mom had that done in both eyes...(one at a time )
are you going to do the Lp ? or did you not decide yet.....
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
TuTu, you snuck in while I was posting!!!
I think you are right about the LP! I hope that my LLMDs would agree that it's not a great idea. I think that, if they thought it would help anything, they would have asked me to do it already.
I really have to stop getting so freaked out by everything. I wonder how I got to be this way.
Maybe I read TOO much or perhaps still not enough?
I do hope the reevaluation of the IDSA guidelines will make some kind of difference in all the confusion and controversy surrounding these TBDs!
Can you imagine if we could get the 8000 members of IDSA to take TBDs seriously?!! IT might actually make a difference in all this, if some of them would open their eyes.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
You sneaky people!!!!!
Hi mtree!
As far as deciding on the LP, I'M still against it. I think maybe I might call my LLMDs & make sure that they concur & then call Dr.S & tell him tough noogies. That's not very nice.
Maybe I'll just ignore it, since Dr.R said I don't have to & Dr.S. said I didn't have to go back to him, and hope it goes away.
I think that sounds like a plan. They'll have to catch me first!!!! LOL
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Cobweb
Unregistered
posted
Hi Ali- have to admit you lost me several posts back- but that is not necessarily your fault.
I have a short attention span.So I cut to the chase and zoom zoom zoomed to the end.
But it does seem as if something is getting better which is great. You seemed to have had a real scare-and that's scary in itself.
I have nothing really to add- except support!
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Sorry Cobby,
I probably lost ME a couple of posts back.
I have decided today that I am NOT going to have MS. If I don't get the LP, and that's what they want it for, then I WON'T HAVE IT!!!!!!
Right? If they can't confirm it, they can't prove it. JUST LIKE LYME!!!! Na~Na-Na~Na~Na
Run, Run, as fast as you can - You can't Dx me, I'm the gingerbread man!!!
OK-I've officially lost it
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
not that I had it to begin with.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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I'm with ya...I have decided today too that you do not have MS
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I've also decided that I WILL NOT have "chronic Lyme"!
I've decided that I WILL NOT have pain. I WILL NOT have confusion. I WILL NOT have memory issues. I WILL NOT HAVE VISION PROBLEMS!!! I WILL NOT be extremely fatigued. I WILL NOT have to get up & tinkle every hour on the hour during the night! I WILL NOT have any rashes. I WILL NOT have headaches. I WILL NOT wake up in a sweat. I WILL NOT be highly irritable. (I'm not sure if I left anything out, did I say that I WON'T have memory problems?)
I WILL NOT have any symptoms at all!!!!! (That should cover it! )
Heck, I don't even have this pain in my left knee!
Watda-ya-think? Sound good?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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I don't think any of you really missed this. It originally said "Optic Neuritis - Please help me!!!" and I was looking for info on that. If you never had the "ON", you would have likely (& understandably)SOB'd. (It wasn't you, it was me! ![[Wink]](wink.gif)
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Hi dear Ali!![[kiss]](graemlins/kissing.gif)
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Maybe I can talk Dr.R into ABX before/during/after surgery?!! That could be worth a shot!![[spinning smile]](graemlins/spinsmile.gif)
mtree![[puke]](graemlins/puke.gif)
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but you need support from your doctors...not more confusion then you already have with your symptoms.....![[lol]](graemlins/lol.gif)
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